Yesterday everything changed

Lindzanne · April 2016

Hi. I got the phone call yesterday that the biopsies I had last week were positive for BC. I still know little. I have a positive node and the lump they tested was positive. They said it's Infiltrating Ductal Carcinoma, grade II, HER2 negativite, ER+ & PR+. I still don't really understand what that means even though I am taking good notes and all the staff I've spoken with patiently explain everything and tell me that it's very likely I will survive this and thrive. I have an appointment with the surgeon in 2 days. I felt an odd peace after the terrible anxiety of waiting, and today I almost felt normal all day. Now, at night, while my incredibly supportive husband sleeps, my mind races with all the worst fears. That it's all over my body because of the positive node, the sadness of maybe leaving everyone I love, I feel selfish knowing that there are many that probably have it worse than me, I feel terrible like I am causing all these people I love so much so much fear and pain. I know that's ridiculous, but I suppose this brings out a whole range of feelings. There were changes in my breast for several months, but I thought nothing of it bc it came and went with my cycle, until I realized there was an actual lump and went to my PCP after my husband felt it and said, that's not right. It was soft, it moved around, it was smooth to the point my PCP referred me to the breast clinic saying, "I'm 90% sure it's nothing, if feels like every benign lump I've ever felt." But thankfully I took her advice and went for the referall and this roller coaster began. I feel so stupid I didn't go see her about the changes sooner.

I would say 80% of my day I felt calm, positive, grateful, supported, and like each day at a time is what we get and it's a gift. Now, I feel alone, terrified, confused, angry, selfish.......so many things. I will be 36 in a weekk, and finding it hard to look forward.

I've been reading these boards the last few days and see so much hope and support. I just needed to put my feelings out somewhere, a place where people might understand. It's also an odd feeling---if I post this, it's another thing saying, this is really happening.

That's all. I send love, peace, and support to everyone else on here too.

This seems like a great place. Whoever reads this, thanks for listening.

Smurfette26 · April 2016

So sorry you have found yourself here Lindzanne. You will find a wealth of information, support, encouragement and love on these boards. Your roller coaster of feelings and emotions is very normal and it may help to get something to calm your nerves if you feel you need it. You will feel better when you have more information and a treatment plan in place. Thinking of you and sending love and light. Donna.

ml143333 · April 2016

Lindzanne - I am so sorry that you have had to join us here, but you will not find a better place for education and support!

You are going through so many emotions right now and all are valid. There will be days and moments when you feel normal again - it does happen, but give it time.

When you go to your appointments, take someone that can help you listen and retain information.

Once you decide on a treatment plan, you will feel even better. Then when you start treatment, you feel a little more in control.

Please take time each day for you. Remember to breathe and keep moving forward.

dtad · April 2016

Lindzanne....Im so sorry you have to be here but welcome. I know you will find this forum very helpful. You are now in the worst part of this journey. I promise you will feel better once you have all the facts and a treatment plan. Please feel free to private message me if you would like to talk one on one. Good luck and keep us posted....

PurpleMinion · April 2016

Part of what it means: grade 2 = not the most aggressive and +++ = lots of treatment options, so, that's good news! Hang in there, once you get started on a treatment plan you will feel better. Don't hesitate to ask for some help if you are having a lot of anxiety and/or insomnia, there's no shame in taking xanax when you need it or ambien or whatever.

Anonymous · April 2016

Hi there Lindzanne, your story is so much like mine (I have ILC though, not IDC). But being told "it's nothing", it didn't manifest itself as a typical cancerous lump, etc etc. Sometimes being at peace with the dx, and sometimes being frozen in fear.

I also laid awake at night and finally asked my surgeon for low dose xanax to help me sleep. He was great and told me he'd give me whatever I needed, so I took half of a .25 mg Xanax from time to time because I needed my rest to make good decisions and support positive emotional health when I was awake.

The fact that you are ER/PR+ and HER2- is a great thing. Grade II is better than a higher status, too. Hang onto that information and let it comfort you when you're fearful. Lots of treatment options and chances are very, very high you'll live to be a ripe old age like you planned and die of something else

Hugs

Claire

Kicks · April 2016

A positive node does not mean that your IDC has automatically spread to other parts. Many of us had quite a few positive nodes but no mets - all 19 of the 19 nodes removed were positive - no mets and still NED (No Evidence of Disease) after 6 1/2+ years.

DL not be surprised if full body MRI/CT (with contrast) and/or PET Scans are ordered. As you have positive node(s), these are often done to varify that there are no mets.

After you meet with the surgeon you should have more answers (write down all your questions and take it with you to the appt.) but may come away with more questions. Will you be seeing your entire team? A TX plan should be all inclusive - not just a surgeon but also a Chemo Dr (MO) and Rads Dr (RO). Basically - a surgeon 'cuts', a chemotherapy Dr does Chemo and a Rads Dr does rads, each in their own Specialty but for best outcome for you they need to be working together for a comprehensive TX plan.

Though surgery is often the first line of TX, it is becoming more common that neoadjuvant (pre- surgery) chemo is used for a better surgical outcome.

Be sure to get copies of every test/scan/etc and file them away. They may be needed by you in the future. Also this allows you to actually see what is there - not just a summary. Taking notes is great but using your smart phone (or a tape recorder) what is said is good, if need to clarify later what you were told that is my h better than written notes.

Is your surgeon a 'general surgeon' or one who specializes in breast surgery?

ER/PR+ that your cancer 'feeds' on estrogen so will probably be on an 'estrogen blocker' for some time. HER2 - means that you will not need a yr of Herseptrin infusions.

As you know you will have node(s) removed, request a referral to a LymphEdema Therapist for a pre-surgery baseline evaluation and education. Unfortunately, many Drs are 'clueless' when it comes to LE so we each need to be proactive/our own best advocate with this possible future SE.

Hope that gives you some thoughts that help.

Lindzanne · April 2016

Wow, I am blown away by all of your responses. Thank you so much for your kind words, advice, and clarifications on some things. Kicks, I believe I am seeing a breast surgeon. I spoke with my coordinating nurse who was amazing and who apparently is an advocate just for me to make sure my team does what they are supposed to do for me and she made it sound like he was---but I will find out tomorrow I guess! My husband will be there and does not mess around when it comes to asking quiestions, documents, etc. I'm shyer and of course in a daze! But I write EVERYTHING down even if it means I have to go through my scribbled notes to ask what they mean later!

Every single one of you have made me feel better. How amazing that you don't know me but came right through with advice and support. I was going to say you have no idea what it means to me-----but given where we all are, you probably do!!!! Thank you!

bluepearl · April 2016

Ask for an oncotypeDX test too, to see if you would or wouldn't benefit from chemo. You have an average growing tumour that hasn't got the aggressive HER signature and with it being hormone positive, you will benefit greatly from tamoxifen. Being so young, you might request a gene test as well...BRAC...to see if your are positive or negative for that too. So sorry your r here but good advice and friendship comes your way too. Hang in there!!!!!

msphil · April 2016

sweetie please know we are here for u most us here know what your feeling but it does get better once treatment plan in place and for HOPE i am this yr 22 yr SURVIVOR PRAISE GOD.msphil idc stage2 0/3 nodes L MAST chemo n rads n 5yrs on tamoxifen

Karenna16 · April 2016

Hello. I am new here too. My sister was diagnosed with BC last evening. I have absolutely zero info at this time about her specifics. She is 52 years old.

I just wanted to let you know that I am thinking of you and that I am so sorry that you are going through this. Thank the Good Lord that you have a loving and strong husband. You are so young.......but, I have a really good feeling that you are going to get through this just fine.

I had a brain tumor removed in 2003 and I am doing remarkably well these days. I was very sick and dying back then....I never, ever thought I would feel better again. But.....here I am......feeling great and back to 'normal'.

Life throws us curve balls.......that is for sure. I will be my sister's advocate as she has nobody else.....and she has learning disabilities and this is going to overwhelm her. I thank Go that I am healthy and strong to be there for her.

I pray that you will have all the strength, love, and patience that you need in the days ahead.

Love and compassion coming your way!

Lindzanne · April 2016

Karenna16, thank you so much for your kind words and thoughts. I really needed to read them just now. I am so sorry about your sister's diagnosis. It sounds like you will be an amazing support for her--my sister is too but it also hurts me to see her hurting for my sake. The support of family means everything. Thank you so much for taking the time to respond to me.

Jennyannk73 · April 2016

Your story is just about identical to mine. I know what you are feeling is crazy scared right now but it will get better and you will cry less and less.

Other than aromitase inhibitors and ovary suppressing drugs I am all done! You will get there too! Bless you, and let me know if I can help!

Jane75 · May 2016

Hi lindzanne,

I was diagnosed in March and went through all of the feelings you mention. I had exactly same type of cancer as you; had a mastectomy last month, and because a mammoprint test came back as high risk, I start 4 rounds of chemo next week.

The hardest part for me was seeing those around me suffer, but take my advice, this is all about you and you need to be selfish to make sure you get better and have all the support you need.

ryland19 · May 2016

I just found out this past Friday, with ultrasound it was only 2cm ( only...I was worried) had a MRI today and its not 2cm but 8cm.....I am feeling the same way.....My anxiety has skyrocketed and im obseesed with trying to figure out how to fix this....How does one stop from letting this consume your mind every waking moment?

Yesterday everything changed

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